Sunday, July 13, 2008

7/13/2008

So I wrote a really long post late last night, and for some reason it didn't post for some reason. Anyway, the surgeries went well, with the expected outcomes. The right ring finger and left hand about an inch above the wrist was taken as well. They also closed the leg wounds, and hope to just allow that to heal without further surgeries. All of this was done at 8 am yesterday.

It has been a very emotional weekend for Carol. Apparently on Saturday morning the nurse came in about 1 am and she was crying. When I got there at seven, she clearly mouthed to me "what is happening to me today". She knew. So hesitantly told her some of what was to come, but not about the whole left hand. Not sure she actually understood still what exactly was going to and has happened. She tried to make a motion to give me a hug. I just reassured her she would be able to hold and hug everyone again.

Today, at least when I was there, she was emotional as well. It's been a tough weekend for me, in that I seem to be causing her the most increase in emotion and heart rate. She had lots of family and her old highschool friends around. Thanks for all you coming...I know it meant the world to her. I took the chance to get things around the house finalized for Safiya coming home (laundry, groceries, etc.)

Safiya ended up coming home Saturday night instead of Friday, because her doctor decided she needed a blood transfusion. Her hematorcrit is now stellar, and I don't have to readmit her later to do it. She was borderline low, so it was a judgment call. She kept me up all night. I am not at all used to getting up at night. Chloe slept through the night at about 3 months, and before that Carol handled it all. It went pretty well though. In the morning Josh brought Chloe over for an at home intro (she has met her several times at the hospital). Went great at home until it was time to give Safiya a bottle, and I think Chloe thought I was hooking her up with an old friend. She lost it. By the end though she was helping me change a diaper on Safiya. That's the angle I think I am going to stick with...I need you to help me with this/that.

I took Safiya with me to the hospital today, and we were given a room to nap in as needed together.

So the agenda for the week is as follows. Tomorrow physical therapy starts....on the legs specifically. The vent was wheeled out on Saturday. Carol has been breathing on her own for many days now. I don't think they even used it for the last surgeries? The goal there is to put a stopper in the trach so she can talk and be heard. Also this week the skin debridements and grafting will start, they have just been waiting on the grafting material. They have decided it seems to go with a synthetic grafting material. Which I am guessing must just promote her own skin to grow. But these are all not that scary compared to the last couple weeks. Its has been a couple weeks of bad things we knew that were coming, and were very hard on the days they happened on, but, it feels good to have some finality and say at least for me...let's move on and get her better.

The harborview thing is on a total hault for now. She is not acute enough in any aspect to be moved for skin related conditions. I am still pushing for the prosthesis/orthopeodist there though. He's supposed to be the best...Swedish's ortho dept is good also though. I don't know enough about it to justify one over the other, except for the physicians reputations.

16 comments:

Sounds like a long weekend. Sorry to hear Carol was crying. I can't imagine what she's feeling. I hope the hardest is over, and now she can heal. Chloe is going to love helping you. I definately think that's a great approach, then she always feels included. Good luck with Safiya. I hope you can get some rest. Always keeping you and your family in our prayers.

What a big weekend. I'm so happy to hear that the surgeries went well and she can start healing. I can't even imagine what Carol is going through or you for that matter. Sounds like you're doing great with 2 at home. And you will eventually get used to the no sleeping at night thing. :) I'm glad that Carol was also able to see some old friends and family. That's great! And I hope that you'll all get the rest and answers that you need. Love, Jodi and Mick

So glad to hear the baby is home! We're happy that everything went well with her surgeries and recovery can continue. Chloe sure has her work cut out for her! You guys are constantly in our thoughts and our prayers. Carol is so blessed to have such wonderful family and friends. Keep fighting!

I can't imagine doing it all, supporting your wife, playing the mom role at home and also trying to keep it together for work. I hope you use any help that is still offered so that you do not get burnt out. Carol needs you now more than ever with her being awake and trying to figure things out. I am so glad that things are looking up for her. I always have a prayer in my heart for her.LOVE,Bryn

I'm thankful that Carol has come through another hurdle. She can heal and come home soon. I can't imagine what you both are going through. I'm sure she feels not connected with the girls and you. She has been through so much. I'll pray she can get home sooner then the doctors think and be with you and the girls and start the next journey in her life!

Please ask for help with the girls or whatever you need.

Lots of people love you guys and are praying for you both. Let us know what else you need, and we'll be happy to help you!

You're amazing and strong, it comes through in you blogs. Thanks for them. They are appreciated.

I sure wish I could just fix it all...Please let us all know how we can contribute. Cohen would love playing with Chloe and helping Safiya. We can occupy them both while you nap, visit Carol, do chores, whatever.I can contribute any way necessary. I am thinking of visiting Carol today but will wait for the go ahead.Also, because I work in Renton I am right in between the hospital and Enumclaw. I can help with transporting the girls. Just some ideas to help. My mom is off this summer because she's a teacher. We will help!

Scott - thanks for keeping us updated. Any word about a swallow evaluation to determine when she can start eating? I'd also suggest a psych consult as soon as she is able to communicate. I'd expect some depression and anxiety with all that she has been through (we medical folks seem to forget about the emotional and psychological impact of illness). Thinking of you a thousand times a day and wishing you peace. Kathryn & crew

Amy, you can go up anytime. Kathryn, I asked about a psych consult yesterday or the day before, and they felt a little too early they think communication wise. They are watching how things go this week, and maybe antidepressant therapy? Not my favorite idea, but may be in order.

I just visited Carol a few hours ago. She looked beautiful and cute at the same time (mostly because of her pig-tails). She told me they did her hair this morning. Her hair still looks fantastic and I told her :)Carol was so excited to be able to talk again. Heath was there helping to surprise her mom, dad, and broter by calling them. We (including the nurses) were crying with excitement at Carol's progress.

Carol kept me smiling because she expressed concern about how much her family was having to drive. Just as others have told her I explained it's not a problem for them. How like her to worry about others.

She asked her brother who was caring for the girls and seemed relieved to find out her in-laws were on the job. She said she was happy they were home together.

I'm excited to know that Dr. Pappas (a pulmonologist with a great reputation) is now overseeing Carol. Carol said she remembered him from her days working for Dr. Demopulos. I reminded her that she was being well taken care of thanks to her family.

My hope is to attend her homecoming party on or around her August birthday.

i cant get the comment thing to work on your blog page so i hope you get thisi know its hard for you with both girls home right now, especially that baby is home now, remember that she hasnt had the kights out and bed time since she was born being in the hosptial she doent know night from from day. its very common.well the harborview thing is not going liked you planned uh?well dont take it personally, its just hard to get in there if your not already their.hey remember ill come to your house and help with the girls......im a good mom and great with kids really, just ask, the last week of july i am off. and the first week of august.carol will have ups and downs emotionally, it is normal...she will feel like she did this to you also, its normal...its not you making her emotional, its the whole thing hitting her every time she wakes up....just know you and your family are loved, i been in your shoes, its hard...cloe will be ok just ley her be little mommy, but be careful she might try to take over when your not in the room.ok well anything else i can give my opion on let me know ok i am here for you guys always...you need me to come up to the hospital let me know ok.lots of love,charity

Scott - Meds may not be necessary, maybe just some suggestions of ways for her to begin to process what has happened and prepare for the road ahead. Dr. Pappas is THE BEST!!! a great pulmonologist and a wonderful man. I worked close to him at M&J when I was there and he is a really caring, smart guy. I'm glad to hear he's a part of Carol's team.

I'm thrilled to hear that Carol is talking - I'll bet she's got a lot to say! Please tell her that I said hello and give her a kiss for me. I know Jane has been by a couple of times and she lets Carol know that I'm there is spirit.Love you Carol! Kathryn

Carol,I will be up there to give you hugs and kisses as soon as I am back in town. I miss you sister and am so proud of your progress. Keep fighting to see your home again. Scott, I don't know how you do it but you are amazing. I hope you take it in when all your friends tell you this...you ARE!! I am glad you came "home" so we could be here to help with whatever we can. Love you! E